Student Support Meeting and feeling defeated

Yesterday was a Student Support Meeting for Liam.  It was ill fated from the beginning.....the purpose of the meeting was not entirely clear to me, Dave is out of town, I was awake with insomnia from 1:30am, and on top of all of that, I am sick with what I can only assume is deadly pneumonia (I joke, but it feels that way).

In the room were: Liam's teacher, the school counselor, the school psychologist, the school SLP, the vice-principal, and the principal.

--First import point, I need to insist the AIG teacher attends all future meetings as she knows Liam really well....probably the best out of those that did attend the meetings.

We addressed Liam's anxiety in the classroom.  The school counselor has made him a social story book with photos of him, and suggested relaxation techniques (deep breathing, counting to 10). Now when he starts to get anxious, the teacher directs him to the book.  She said she is more responsive and has learned to direct him to the book before he starts crying.  She reports it is working well and he seems to have more confidence.

--Point for the school: they are writing social stories for him without an IEP and doing some things I'd want written into an IEP, like he takes the book to a quiet corner of the classroom and gets time to decompress and gets a sensory break.

I was asked what I am doing at home to help him manage anxiety and ensure a healthy brain-body connection.  I mentioned he does gymnastics and it was suggested that I look into kids yoga or karate for him.

--Do they really think I am not doing enough for my child?  I am not sure when we would fit in another activity.  I started to feel defensive around this point.

We talked about his reading fluency and this kind of took me by surprise as I had not been told it was an issue though I had some suspicions.  His reading evaluation show he is ABOVE grade level in reading.  His fluency score are BELOW grade level despite this.  Then of course, the fluency was averaged in to the total score which brings it down (but still above grade level).  Because of this, they are "working on fluency by having him read below his tested ability."  They talked to me about having him use a ruler when he reads at home and said this is a maturity thing that he should outgrow around age 7.  I am not sure I believe that.

--I need to figure out who to see to test either his reading or his visual tracking or both.

--I am unsure about this idea that it isn't a big deal especially since it means he is not performing up to his abilities.

Then we discussed Liam's writing, and this was when things really went downhill and I started to feel very frustrated.  According to his teacher, writing is not an issue at school.  The fact that crying ONLY happens during periods of writing is a coincidence and all chalked up to his anxiety.  She claims his writing is "middle of the pack" at school but acknowledges that her class this year does not have many middle students, almost all above grade level or below grade level.  In addition, she acknowledges that he does not form his letters correctly (starts in the wrong place and the result is awkward). I asked for him to have accommodations and the only one completely agreed upon is using the paper from Handwriting Without Tears.

Once again, all the focus was on what *I* can do to help him.  They did agree to keyboarding his homework but declined allowing me to scribe it for him.  At school they would like him to write.  They asked how much I make him write and whether I offer a variety of writing tools (i.e. colored pencils and not just crayons, etc).  They ask whether I do "OT homework" with him and how often I make him write.  He gets on the bus at 6:50am and gets off at 3:15pm.  On Mondays, I pick him up at school and we spend 2 hours doing speech and OT with him and Ben after which we immediately do dinner and bed.  Tuesdays we do homework when he gets home, then eat an early dinner, then take Ben to ballet, and then it is bed.  Wednesdays we go right to gymnastics then do homework then cook dinner then bed.  Thursdays and Fridays he is free after he gets home (other than homework on Thursdays).  Somehow I am supposed to fit in karate and making him write an activity he hates.  When does he get to be 6?  Why do *I* need to remediate his writing?  Is that not a function of school?

Then the SLP asked about his speech.  She cannot work with him on the R sounds but it sounds like she has been watching him and would be willing to advocate for him, if needed.

Then they asked whether I was requesting testing and while they said it was in my right to do so, they did not see how they could prove academic need based on the fact he is at or above grade level.  By this point, I was just weary, and Liam kept interrupting the meeting and I just wanted it over.  The school psychologist asked if I really wanted him pulled out for special education when he is already being pulled out 3 times a week for AIG.  I want him to have an individualized education, which obviously includes 3x a week AIG pull out.  If he needs reading pull-out or special education pull out to meet his needs, then that is what I want.  I am pretty sure, actually positive, he can have an IEP with all his needs met in the classroom and if that is possible, then that is what I want.

--I need to research NC law especially regarding initial eligibility as he no longer has an IEP and needs testing done to be eligible.

--I need to figure out if there is advocacy and if someone can attend meetings with me.

William's teacher thinks he needs an IEP

Yesterday I got a call from Liam's teacher.  As luck would have it, I got the call while being interviewed by a psychologist in an observation room watching Ben be evaluated for autism.  As soon as the phone rang, I told her "I think this is a call from my older son's teacher and I need to take it."

Getting a phone call saying your son needs an IEP while your other son is being evaluated for autism is not a pleasant experience.  I could feel tears welling in my eyes but I was in a room with several social works, SLPs, and a psychologist.

Obviously, I suspected Liam needs an IEP, but I wanted it before anything happened to make him feel like he failed.

I did not get that lucky.  Liam forgot to bring home his folder on Thursday.  He is supposed to turn his homework in on Friday, and I usually stick it inside his folder.  With no folder, it went in his bookbag.  He came home Friday with his folder.....and his homework not turned in.  I spoke with him about it.

I did not contact the teacher but should have and am beating myself up about it now.

Monday was a holiday so he went back to school Tuesday.  He came home with his folder and his homework still not turned in.  I asked him why and he just shrugged.  At this point, I emailed the teacher.  She has never given her e-mail but the school website has a contact option so I used that.

So Wednesday while I was with Ben at UNC, she called me. She asked me to explain what was going on with Liam's homework.  Then she told that they remind them 5 or 6 times to get their folder.  It is their responsibility.  This was when I thought I was going to cry.  Instead I reminded her that at the meeting in May, I explained he had this issue in Kindergarten and was one of my concerns and one of the things I wanted an IEP for.

I asked her if she thought he needs an IEP and she said "yes" and then mentioned he is doing fine socially and behaviorally, but he does cry in class sometimes, there is the issue with the folder, and sees "some other things" that make her think an IEP is in his best interest.

Next week we have a conference with her when we'll get his quarter 1 report card.  She said there will not be time for IEP paperwork at that point.  And then there is a 3 week fall break. 

I am glad she is on board and will advocate for Liam, but my heart hurts for him.

Left side neglect

I am beginning to suspect that Ben has visual processing issues. When asked to write his name, the result is that in addition to issues with holding the crayon and pressing hard enough, he only uses the right side of the paper. Thanks to my copy of "The Mislabeled Child" I suspect left side neglect. I hope North Carolina has vision therapy and that Tricare covers it.

Continued Aggression

In the continuing saga of last week's strep, there are some updates. 

The weekend was calm and I was hopeful that the antibiotics had killed off crazy behavior.  Sunday was the first time in over a week that the boys seemed like themselves.

Ben saw the ENT for an appointment scheduled after his last ear infection....since July he has had 4 ear infections and 2 bouts of strep throat.  The ENT recommended another set of ear tubes and a tonsillectomy.....This will be Ben's 3rd surgery, the 4th ENT surgery between the two boys, and the 5th surgery I have managed as a mother in a little over 3 years.

Then all hell broke loose yesterday afternoon at gymnastics when Liam was asked to sit up while waiting his turn (he was laying down).  He said no and was asked to sit out a moment and then he HIT his gymnastics coach.  His coach brought him to me, and I was trying to calm him down......Not realizing that class was almost over.  Suddenly, we were surrounded by people and Liam from being angry to a full blown sensory meltdown.

He began to hit me and was grabbing my necklace.  I was trying to wait until everyone left so I'd have more space to move him out.  He realized Ben left his socks on the floor and became upset about that.  He overheard friends were going for doughnuts and became furious with me for saying we could not go.  Ben actually cooperated and found his socks.  I held Liam while pinning his arms to stopp him from hitting or choking me while I put on Ben's socks and shoes.  I left Liam's shoes off as I saw no way to put them on.  Then I carried 50 pounds of flailing, kicking, hitting my face Liam and my diaper bag while holding onto to Ben's hand.....how?  I don't know but I managed. 

Once in his 5 point harness, Liam began to throw anything in the car he could reach and kept grabbing Ben's hand.  I was terrified he'd break Ben's fingers. 

The meltdown lasted about 20 minutes though it felt significantly longer.  It ended as suddenly as it started.

That is the worst meltdown he has had in about a year, since this: http://routhierfam.blogspot.com/2012_01_01_archive.html  But the aggression is so unlike Liam.

So is it autism or is it PANDAS?

Just when I thought I knew everything about SPD

In the summer of 2009, it became clear that something was off with Liam's development and I threw myself into research, and most of it focused on Sensory Processing Disorder (SPD).  I learned there are actually 8 senses.  Then Liam was diagnosed with PDD-NOS and I remained aware of SPD but started researching other things as well.

In fall 2010, I became worried about Ben and blogged about it: http://routhierfam.blogspot.com/2010/11/it-is-probably-nothing.html

Obviously, it wasn't nothing.  Ben started Early Intervention and a year later was evaluated by a developmental pediatrician, who confirmed Ben has SPD and is at risk for a future diagnosis and recommended speech therapy, OT, ABA, and social skills groups.  Without the autism diagnosis and without his delays being severe, we have been unable to secure much of the recommended treatment.

While all this was happening, I was trying to potty train Liam, which was not easy.  Around the time, Liam turned 4, he finally became dry during the daytime.  He is still in nighttime diapers and that will not be changing in the near future.  The problem is that Ben turned 2.5 about a month after Liam was finally consistently dry during the day.  Then shortly after he turned 3, we moved from Alaska to Alabama.

Since arriving in Alabama, we have been trying to encourage Ben to use the potty and it has been a dismal failure.  Initially he refused to sit on a potty for longer than 5 seconds as he won't sit still.  Now he will sit, but he has NEVER once managed to produce anything in the potty.  If I let him run around naked, he will pee on himself and deny he has done so with urine running down his leg.  He can poop while doing gymnastics.  When I change his diaper, he asks me if he has peed or pooped.  He seems to have no awareness.

His OT recently left for another job and he has a new OT, and Wednesday she mentioned that Ben has poor body awareness which is why he drools so much and why he is still in diapers.  I knew body awareness was "part" of SPD but I had forgotten about it.  I had confused it with motor planning (which Ben excels at but Liam struggles with) and with vestibular sense (which is why both boys crash).  Body awareness is actually called interoception and what I discovered about caused all sorts of light bulb moments.

This website about interoception had this to say: "If a person is under-responsive to interoception, they may not feel or respond to these sensations appropriately, quickly enough, or at all. They may rarely feel themselves breathing or their hearts beating. They may not feel hungry or thirsty often, so they may not perform these everyday tasks as often as others because they do not sense the need to. They will often be slow potty trainers and may end up developing enuresis because they do not feel the need to eliminate bowel waste or urine before the body begins to perform the task anyway. They may not breathe or sweat when their bodies should because they do not feel the need to."

Light bulb!

Ben happily skips meals and has never been interested in eating.  He didn't nurse often.  I always attributed it to reflux and even SPD and oral defensiveness, but what if he didn't get hunger cues?  That makes a lot more sense, as it explains multiple issues for him.

Then there is this website on interoception.  It affects digestion!  Digestion!  In another website it mentions that individuals with a poor sense of interoception often have digestive problems, such as constipation and/or diarrhea.

Light bulb!

That same websites and others show that much research has been done to connect interoception to mood, as that is the sense which regulates are sense of well being.

Light bulb!

Ben is my child who has always bounced between strong emotions--screaming one minute, giggling the next.  This cycling of emotions has always worried me as I have a family history of bipolar disorder.  It has also made him hard to evaluate as his compliance varies day to day and moment to moment.

I was going to wait until we moved to have Ben re-evaluated but am starting now.  He has a first appointment with a psychologist on February 7th.

In the meantime, I am going to dig out our old brushes and start Wilabarger brushing protocol as I read somewhere that it helps interoception and brushing was quite successful with Liam.  Here is a list of things I am going to look into for improving interoception: http://www.sensory-processing-disorder.com/interoceptive-sense.html  I am also considering buying some musical sensors that go inside a pull up as it sounds like a good way to alert Ben by sound that he is peeing.

Not sure where to go from here

I have lived here before, so I thought I knew the landscape, but things change in 2 years.

I knew that by placing Liam at a private school, we'd lose his IEP.  I battled with anxiety over that for months.  He has started school (will be a seperate post) and I now am confident that was the best choice.  I am still on the fence about initiating a transfer of Ben's IEP as I expect he will lose it after they re-evaluate him, especially since his only diagnosis is vague.

I did not expect getting private services to be so difficult.  We planned to use Liam's BCBA we used in 2010.  She is not responding to my attempts at contact and when I called Liam's ECHO case manager, she could not find her name.  I got a list of other BCBAs, but it doesn't look hopeful for ABA to work out.  I can get services from 4-6pm or I can drive to Auburn.  Honestly, I am not sure how I feel about either choice.  I can be judgemental and have high expectations and the services offered here in Montgomery did not meet my expectations.  Auburn seems promising but that is a way to drive with two small kids....and the place would be starting therapy at 3pm.  I actually planned to phase out ABA next year as I am not sure it fits Liam's needs anymore.  I am okay with giving it up this year, but I want to make sure he doesn't regress.

Speech services are non-existent here.  The base doctors are referring to only one place and they have a 1 year wait list.  We leave in a year.  I called the place where Liam did private speech last year.  They have a waiting list but it was small and I was really impressed with their new director of services.  I called Tricare to change Liam's referral but was told that center is considered "out of network."  I remember it was when I lived here last, but the Tricare person changed it for me.  This time the Tricare person was quite snotty and said she didn't care if the place he was referred had a 1 year wait list.  I would need to take Liam back to his PCM and the PCM would have to write a justifcation which the snotty Tricare lady said could then be denied.

I cannot have Liam have no IEP, no speech, and no ABA.

I am having trouble figuring out where to go from here though.

He will start hippotherapy in September and he is on a waiting list for OT.  I have looked into social skills groups and the nearest one is Birmingham and would cost $40 a session out of pocket.

Did I mention that I am having trouble functioning due to nearly crippling depression and anxiety and utter hatred of the heat?  No one from base will call me back and there are NO appointments for me to be seen.

Mr. anti-establishment

Ben refuses to be categorized.  Maybe it is the long hair, but he has been doing it his whole life.  As a baby, there was debate about whether he had colic or reflux....Then reflux or GERD....then GERD or failure to thrive.  No one has ever been able to put their finger on Ben.

At the moment, the only thing everyone agrees on is that he has Sensory Processing Disorder, but that is old news.

After his developmental pediatrician evaluation, he got 3 diagnoses....The developlmental ped says he has Early Childhood Developmental Delays, which encompassed the two other diagnoses: Sensory Processing Disorder from the OR and Mixed Expressive-Receptive Language Disorder from the speech therapist.

In following the recommendations, we have started OT and speech.  Two weeks ago, Ben's private speech therapist discharged him from private speech saying that his delays are not severe enough to require private speech.  That same week the teacher of his social skills group asked me if Ben had ANY words as she never heard him talk.  Those are vastly different opinions, aren't they?  When Liam turned 3, we were actually told the same thing....he had caught up and didn't require private speech anymore....Now at 4.5, he has more speech goals than ever and no one is arguing that he is not delayed or that he communicates as well as his peers.

I am not sure what I should do next. Ben is scheduled to be evaluated by the district in March to determine whether he'll require school services.  I wonder which Ben they will get on evaluation day?  The happy, energetic, attempting to socialize Ben or the fearful, clingy, screaming, shutting down Ben?

Seeing him through the eyes of others

I was reminded yesterday why I don't post about Liam's progress: I am always afraid it will be contradicted the next day and that is exactly what happened. Liam's SLP brought him out after his session and was trying to talk to me about Liam's session. She had asked Liam what we did on vacation and he said something about the forest and alligators; she wanted to know if we went to a zoo or something. I haven't blogged yet about our trip to Homer, Alaska, but I assure you in Alaska there are no alligators and on the Homer spit (about 4 miles long and 1.5 miles wide and surrounded by water), there is no forest. In the middle of this frustrating conversation where I realized Liam STILL cannnot convey a simple answer to "what did you do last week on vacation?" a cell phone rang in the waiting room.

To be polite, the woman whose phone rang went into the entryway so as not to disturb me and the SLP.   Her 2 year old followed her and took with him a toy from the waiting room. Liam knows the rules are that toys stay in the waiting room (he sometimes wants to take the toys home). Instead of telling me or the SLP that he was upset, he simply started crying and screaming. We couldn't figure out why he was upset for a couple minutes. In the meantime, Ben freaked out because Liam was crying and I was holding him.   Now, Liam was partially crying because Ben's crying was upset him and he could not calm himself down about the fact the toy had been in the entryway.

The woman and her son came back into the waiting room, looking confused as to why Liam was so upset. This only upset Liam more, and he started pacing around the room, circling the toddler, and rushing up to him, getting in his personal space, all while screaming at the top of his lungs and flapping his arms. It was one of the those moments where I see Liam as how he appears to other people, especially as his behavior was so characteristically autistic. I have seen that behavior several times from older, lower-functioning teen-agers in that same waiting room. I could see the worry on the mom's face as she didn't know Liam and she didn't know if he'd hurt her little boy (who was smaller than Ben). Liam was staying in between her and her son. Bless her, as she didn't interfere and trusted me and the SLP that we would control Liam. I was confident he wouldn't hurt the little boy, but I would have been just as worried in her place. Liam was clearly out of control. I kept trying to get him in a bear hug to calm him but he would scream louder and wiggle from my grasp and go back to rushing up on the little boy. Finally, the little boy gave Liam the toy, and eventually through lots of quiet talking, Liam calmed down.  He didn't want the toy; he just didn't want it in the entryway.

Mini-break

I have loved the term mini-break ever since I read "Bridget Jones" and I love traveling, but particularly like traveling in bite size portions.  I have taken a handful of 7 day or longer vacations/trips, and I always find that I am ready to go home by day 5.  What I excel best at is going somewhere for 3 or 4 days and sight-seeing at break neck speed.  Just ask anyone who traveled in Europe with me.  I came prepared with an itinerary and even in big cities, we'd hit major things to see in just a few days.

Then my boys came along and my mini-breaks screeched to a halt.  We visited family in Christmas 2008, but that was a long trip and painful for all involved.  We took 2 week long trips to Florida.  The first was when Dave was there for training before he deployed and we didn't have any time to see much.  The second time was after the deployment when we stayed at a dear friend's parents' house.  Ben didn't like the beach or the heat and we struggled to find something to do that didn't cause him to scream.

One of the main reasons my boys don't travel well is special needs.  Liam is on the autism spectrum and changes in routine cause him stress.  Both boys have Sensory Processing Disorder which means they have trouble interpreting sensory information.  I cannot control their environment while traveling, so this causes more issues for them.

We took a trip to Seward this weekend (pictures coming) and it was mostly successful but the issues they have with traveling were highlighted.

Liam became obsessed with the idea of "the little house" and began to repeat questions about it.  When are we going to the little house?  Will there be other kids there?  Will my toys be there?  It made for a long drive to Seward.  Once we arrived, he wanted to be at the little house, and he didn't want to leave.  He was so excited about going there, he thought that was the whole idea of the trip.

Lesson learned: Liam has anxiety over schedule changes and I really need to start implementing a picture schedule.  Almost all kids on the spectrum need one and hopefully it would help eliminate some of his obsessions.

Our first sight-seeing stop was a Dog Sled Tour.  When we got to the "sled" the dogs went crazy.  They LIVE for pulling sleds and were barking like crazy to be picked to be hooked to the sled.  The barking was too much for our dog lover Ben and he went into full meltdown mode.  Then the dogs started pulling the sled and his meltdown got worse.  He finally started calming down, by the time the ride was almost over.  Then we got to see puppies, which went well for the most part, except I had to protect the puppy from being squeezed to death by Ben as he seeks out tight squeezes.  Finally, there was an informational portion about running the Iditorod, except I didn't hear any of it because Ben was literally running circles around the property after recovering from the meltdown.

Lesson learned: Ben is sensitive to auditory stimulation and to vestibular input he doesn't control (the dog sled and swinging) but he seeks out tactile input (puppy fur).  He also seeks out hard squeezes and requires non-stop running.  I really wanted to do a wildlife cruise, but Ben on a boat for 4 hours or longer would  have been a nightmare.

The day we left, I wanted to check out a coffeehouse in an old church that doubled as an art gallery.  We planned to eat breakfast there.  As soon as we walked in, Liam started saying "It smells too much in here."  He became agitated and wouldn't sit down, repeating about the smell.  We decided to leave as he was starting to cry and pace.  I asked Dave if he thought the coffee smell was overwhelming Liam, and Dave said he smelled an old musty smell like old books, and maybe Liam picked up on that.

Lesson learned: Sometimes it just isn't worth the battle.

All in all, it was a good trip.  I don't know if we would have experienced more problems if we stayed longer or if there would have been less problems.  In any case, I hope that things start getting easier down the road.  I am not sure how to work travelling around Ben's need for constant movement.  I am wishing Liam could learn to read sooner rather than later so I can write a schedule instead of drawing pictures. I miss travelling and am determined to find a way to accommodate my boys' needs with my desire to see new places.